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The Reading Room

Book Review: The Mystery of Being Human

10 Mar, 17 | by cquigley

 

Raymond Tallis, The Mystery of Being Human: God, Freedom and the NHS. Notting Hill Editions, 2016.

 

Reviewed by Dr Sara Booth

 

This collection of essays – lucid, varied, compelling – is by retired academic geriatrician and neuroscientist Professor Raymond Tallis. A man who may truly be called a polymath, he is not the sort to skulk in a library and never publish anything until it is so perfectly honed that all the life is drained out of his thoughts. Tallis has written and published widely on subjects as diverse as post-structuralism (a critique), artificial intelligence, and the importance of philosophy (defending it against attacks from Stephen Hawking), including a book on Parmenides, a pre-socratic philosopher of whose written work only minute fragments survive.

There are six essays in this beautifully bound edition which, complete with page marker and linen cover, is a pleasure to handle as well as to read. The  subjects of this book, true to form, range widely, thus fulfilling the promise of its subtitle ‘God, Freedom and the NHS.’

In the preface, Tallis defends the brevity and compression of the essay, a form rare in the modern written media, except perhaps the London Review of Books or The New Yorker. He describes the essay as ‘a mind-portable form’, implying that it fits well with the interrupted nature of most people’s attention to their reading. Tallis believes that the essay is the best vehicle to express his well established humanism, self-defined as ‘secular humanism’, and his preferred philosophical stance on life, death and humanity since his teenage years.

Tallis defines this book as mainly a philosophical treatise, whilst he accepts, as I see it, that many will find his essay on the privatisation of the health service political. It is a most heartfelt essay, concerned with the tragic dismantling of the NHS by a ‘cynically corrupt political class.’ The book itself is dedicated to members of Stockport NHS Watch, with whom Tallis was moved to leave the library and to protest in the streets, and experience that he found difficult yet exhilarating.

In Lord Howe’s Wicked Dream, also the longest essay in the book, Tallis excoriates successive Secretaries of State for Health, saving his strongest contempt for Jeremy Hunt. In the short time since this book was published, there have been the strongest signals yet that the service is crumbling away under strains (ageing population with multi-morbidities and little attention to preventative health maintenance) that have been obvious albeit ignored for decades, and those heaped on the NHS by whatever the political equivalent of iatrogenic illness is: Hunt, for example, ramping up individuals’ expectations of what they should demand of the health service, demeaning those who work for it, reducing funding in real terms, and bringing in private companies to profit from the easy work. The Health Service is the most obvious example of the widening gulf between political rhetoric and lived reality, and illustrates the crude attempts to bring critics of (successive) government’s health policy into disrepute. Tallis’s essay is a powerful cri de coeur marred only, in my eyes, by the use of the term ‘swivel-eyed’ which always conjures up the clever, arrogant sixth former to me. It is now a hackneyed phrase which should be jettisoned. Otherwise, all too plainly, what Tallis has predicted is clearly coming to pass and his systematic destruction of the ‘alternative facts’ peddled by the government is cogent and impressive. It is wonderful that so many people give so many examples of still excellent, humane care in spite of the strains. Mid-Staffs remains a terrible example of what can happen when the wrong incentives narrow targets and ‘punishments’ are applied.

The current mayhem in the NHS and the political reactions on all sides impede any chance of looking constructively at how a ‘free at the point of service’ can be maintained. It is clear that we need also to convince people of the value and impact of looking after themselves by behaving differently and valuing what health they have, as well as looking at taxation. We also need someone in charge at the Department of Health who is interested enough in the Health service, and broad-minded enough to listen,  to understand what the work entails. Jeremy Hunt’s complete ignorance of what the reality of junior doctors’ lives are like, as well as his readiness to misuse statistics, has caused a huge mound of distrust to build between the Department of Health and the clinicians who work within the NHS.

Other essays in the book are more clearly philosophical. Tallis alerts us in the preface that a ‘philosophical novice’ might find his essays ‘demanding’. (Reader, I admit that I did). He has a deep, long-standing interest in time and the need to  ‘engage with physics and…rescue time from its jaws’. He feels that time is far too complicated to be left to those who reduce it to a set of numbers.

Unlike Professor Dawkins, Professor Tallis wants to engage, rather than belittle, those with religious or spiritual beliefs. In a wonderful essay, God and Eternity for Infidels, he concludes that that ‘the challenge of humanism is to retain a numinous sensibility without the continuing support of the idea of God or churches.’ In an equally enjoyable and thoughtful essay sparked by an everyday event On Being Thanked by a Paper Bag, Tallis considers the complexity of human consciousness.

In summary, this is a book that will provoke thought and new ideas in the reader – or at the very least a new way of seeing and thinking about many aspects of our lives. Reading it, you will also probably want to read more of what this thoughtful and humane thinker has to say.

Book Review – A Body of Work: An Anthology of Poetry and Medicine

9 Mar, 17 | by cquigley

Corinna Wagner and Andy Brown (Eds.) A Body of Work. An Anthology of Poetry and Medicine. London, Bloomsbury, 2016, 532 pages

Jack Coulehan, MD, Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY 11794 USA

At first glance medicine and poetry seem like strange bedfellows. Yet, consider the fact that medicine has strong roots  in the world of art and symbols, and poetry can often be, as the editors of A Body of Work put it, “the deep music of bodies in pain.”  Because of its brevity and immediacy, poetry occupies a special place in the medical humanities movement, which seeks to explore issues of illness, suffering, and healing through the lenses of literature, history, philosophy, cultural studies, visual arts, and other humanities. In their introduction to A Body of Work, editors Corinna Wagner and Andy Brown ask rhetorically, “Poetry: What Is It Good For?” This brings to mind the famous lines from William Carlos Williams’ late poem “To a greeny asphodel,” “It is difficult to get the news from poems, / yet men die every day / for want of what is found there.”1 Perhaps poetry is like a vitamin, required for human flourishing, if not survival.

Several anthologies of poems about illness, disability, medicine, and healing have appeared in recent years. In addition, anthologies of poems written by doctors, nurses, and other clinicians are available. Does A Body of Work contribute anything  substantially new to this genre? The answer is a resounding Yes. The book’s subtitle, “An Anthology of Poetry and Medicine,” could be loosely applied to the earlier collections, but A Body of Work is the first to take the conjunction “and” quite seriously: not just an anthology of poems with the relevant subject matter, or poems written by medical practitioners, but rather an exploration of the relationship between poems and medical beliefs at the time of their writing.

Wagner and Brown situate poems in historical and cultural context by including excerpts from medical writings of the same period. These allow the reader to understand, at least to some extent, the mindset of the poet and his or her original audience.  Because in each major section, poems and medical texts are arranged chronologically, the reader may also observe how medical understanding of a poem’s subject matter evolved over several centuries.  This contextual approach creates a dialog between poetic and medical expression.

The Body of Work is divided into eight topical chapters: Body as Machine; Nerves, Mind and Brain; Consuming; Illness, Disease and Disability; Treatment; Hospitals, Practitioners and Professionals; Sex, Evolution, Genetics and Reproduction; and Aging and Dying. Within each section, poems are arranged chronologically, as are the excerpts from medical writings that follow. Consider the first chapter, which explores the metaphor of the body as machine. One of the first selections is by an anonymous 19th century poet who wrote:

Observe the wonderful machine,

View its connection with each part,

Thus furnish’d by the hand unseen,

How far surpassing human art! (p. 29)

 

In later poems this Enlightenment metaphor is variously affirmed, transformed, critiqued, and denied. For example, in the mid 19th century, Walt Whitman firmly rejected the mechanical man in “I Sing the Body Electric”: “And if the body were not the Soul, what is the Soul?” and “If anything is sacred, the human body is sacred…” (p. 33) In the early 20th century, D. H. Lawrence extolled the self-healing powers of body and soul, “I am not a mechanism, an assembly of various sections…” ( p.38) By the 21s century, poets were writing  about their bodies with considerable irony, as in Jean Sprackland’s “Supraventricular Tachycardia.” The body is distinctly flesh, but not a machine, “my excitable cells don’t wait for the messenger.” (p. 68)

Similarly, medical elections in this chapter range from Julian Offray de la Mettrie’s explicit Man a Machine (1749) to Varieties of Religious Experience (1902), in which William James argued that such medical materialism is a “too simple-minded system of thought.” (p. 81)

Chapter 2, “Nerves, Mind, and Brain,” the evolution of poetic and medical perspectives on mental and nervous disorders. Take, for example, melancholy. John Keats (1820) spoke in the third person when he described melancholy as a spirit that may fall “sudden from heaven like a weeping cloud” on helpless man. “His soul shall taste the sadness of her might / And be among her cloudy trophies hung.” (p. 88) A century later,  Edward Thomas, internalized melancholy, “What I desired, I knew not, But what e’er my choice / Vain in must be.” (p. 94) However, by the 21st century, poets have begun to assert their determination to fight and win at least small battles over depression, as Jane Kenyon wrote in “Having It Out With Melancholy.” Though “pharmaceutical wonders are at work,” she told her antagonist, “Unholy ghost, / you are certain to come again.” (p. 115) Medical writings from the 18th to early 20th century reflect a dramatic change in beliefs about the etiology of melancholy, from George Cheyne (1733), who claimed the illness was attributable to the damp climate, rich food, and sedentary lifestyle in England, to Sigmund Freud, who explained the disorder in purely psychodynamic terms.

The Body of Work contains countless such resonances between medicine and poetry that, from a medical humanities standpoint, give considerable added value to the more than 300 fine poems collected within.

However, the book does have one somewhat surprising deficit, given the editors’ avowed intentions. While contemporary poetry is numerically overrepresented (as is appropriate), the most recent medical writings date from 1919, aside from a brief excerpt from William Carlos Williams’ Autobiography (1948). Thus, most of the poems reflect dramatic developments in the understanding of illness that occurred in the last hundred years, while corresponding medical pieces are absent. Certainly William Röentgen’s “On a New Kind of Rays” (1905) and Joseph Lister’s “Illustrations of the Antiseptic Method of Treatment in Surgery” (1867) led to significant advances in the world of medicine, but haven’t similar developments in mid to late 20th century also radically influenced poetry about illness and healing?

Despite this caution, I strongly recommend A Body of Work to anyone interested in poetry about illness, or poetry and medicine, especially students of the health care professions and their teachers.

Book Review: Illness as Many Narratives

7 Mar, 17 | by cquigley

 

Illness as Many Narratives: Arts, Medicine and Culture

by Stella Bolaki. Published by Edinburgh University Press, 2016.

 

Reviewed by Birgit Bunzel Linder

 

Stella Bolaki’s Illness as Many Narratives introduces several instructive case studies that squarely fit into the critical mode of the second wave of the medical humanities. Drawing on diverse arts and media such as photography, film, animation, performance and artist’s books, the author argues for more extensive cross-fertilisation between contemporary arts and media practices and the medical humanities. Bolaki’s various interpretive approaches are offered as tools that aide in strengthening the dialogue between medicine and broader culture.

The concept of the ‘critical’ in the medical humanities has recently been defined as the ‘embrace of new historical, cultural and political perspectives, as well as different questions and methodologies.’ (Whitehead & Woods, 3) It is guided by the question how one might ‘productively rethink the notions of collaboration and interdisciplinarity’. (3) It is exactly this quest for collaboration and interdisciplinarity Bolaki successfully models in her book, thus adding new perspectives and theoretical tools from the arts and media to the illness narratives of the first wave and to the alliance with the social sciences of the second wave.

In the Introduction, Bolaki broadens the scope of narrative to include forms of art and the media that are related to communicating. These ‘emergent narratives’ allow in various forms and structures to tell of the messiness, complexity, plurality, and diversity of illness experiences while at the same time summoning ethical perspectives toward the nexus between individual socio-cultural and medical predicaments. This leads to the core of her argument, namely that ‘[i]t is the active fashioning of tools, this constructive process that draws on different disciplines and perspectives, that I argue should be at the heart of the critical medical humanities.’ (12) Ideally, this set of critical tools proliferates mutual interplays between the arts/media and the medical humanities, a ‘critical interloping’ (13) that decenters the literary narrative form in favor of collaborative and interdisciplinary representations.

In the chapters that follow, Bolaki introduces a variety of emergent illness narratives. She begins with two very dissimilar photographic representations of breast cancer, The Picture of Health? (1985) by Jo Spence, and Self Portrait in a Single Breasted Suit With Hare (2001) by Sam Taylor-Wood. The two photographic forms of exposure—one revealing and one concealing—are remarkable examples of how word and image together mediate the illness experience. Verbal aides, such as captions, interpretations, photo essays, other fragmented texts, and the integration of various cultural theories provide intimate and authentic witnessing of personalized experiences that influence public perceptions of breast cancer differently than either ways of communicating could do separately.

Martha Hall’s artist’s books chronicle her experience with breast cancer and her receding life. Artist’s books are primarily anti-establishment works of conceptual art that use and deconstruct the form of the book, making art accessible to the wider community. Hall uses paper sculpturing, unusual binding structures, and various crafts to translate her illness experience into viewable and touchable objects that draw the ‘reader’ into a participatory experience. Artist’s books have an advantage over literary texts because the non-diagnostic participatory touch establishes a clear association between ill body and illness narrative and invites individualized ethical considerations.

The Chicano performance artist Guillermo Gómez-Peña challenges cultural perceptions of the ill body and represents his own experience with liver and infectious disease. His performances connect the individual experience with and within society, and, as a pedagogical strategy, widens the gaze from the isolated ill body to its network of (cross)-cultural practices. Gómez-Peña performs two perspectives: the culture-bound medical view of the body and the body’s view of culture-bound medicine.

Nick’s Film/Lightning over Water (1979) by Wim Wenders records the last few weeks of Wenders’ friend Nicholas Ray who is dying of lung cancer. The film portrays the messiness, helplessness, and failures that arise from exploiting someone’s dying experience artistically. The film form makes visible the very unspeakability of death, and chronicles a shared experience that effects an immediacy of experience and poses unanswered questions. Perhaps the most therapeutic aspect of this palliative project to all involved is that in chronicling his own dying, Nick’s legacy survives through the film.

The experimental and autobiographical theater “Well” (2004) by Lisa Kron is a relational narrative of Ann Kron and her mother regarding their different therapeutic approaches to chronic fatigue syndrome and allergies. Through a radical change in lifestyle, the daughter’s story leads to healing, while the mother opts for medical treatment, yet cannot escape her illness. The play prepares for a realistic clinical uncertainty that is not just determined by medical limitations but also by different individual responses to illnesses and treatments.

Finally, a set of six collaborative online animation films called Animated Minds (2003) each address a mental disorder. While he patient’s voice-over narrates his or her experience, there is a collaborative effort in animation, coloring, and music. This form of collaborative artistic expression is particularly striking, and much of what remains unspeakable in the written word becomes speakable in animation and therefore counteracts isolation and stigma. Fish on a Hook impressed me the most. The very respectful, empathic yet matter-of-fact voice-over draws the audience into an alternative world (or what Bolaki calls ‘alternative knowledges’) of a mental disorder (agoraphobia and panic attacks) that might otherwise remain inexplicable. If the strength of Wenders’ film lies in its immediacy of experience, the relative anonymities in Animated Minds (and in particular Fish on a Hook) succeeds in a kind of distancing that allows critical and unencumbered engagement. It enables different dialogues about lived experiences that also include fear, resistance, loss, helplessness and the social context that define these.

Bolaki’s examples reveal several commonalities. All of them display a complexity and authenticity of experience, and result in productive learning from disorderliness and failures of representation that challenge previous discourses of mastery. In these examples, we can see what we already know but often ignore: that no patient’s illness experience happens in a vacuum, or, perhaps even more importantly, within a medical bubble. The deconstruction of art forms through messiness and fragmentation are a ‘body speak’: they mirror the ill body’s deconstruction and disintegration. Moreover, the artistic forms are of great importance because they are related to questions of ethics and politics that explore the many ‘metastasised’ conflicts around illness. The communicative acts are tightly bound to the question of ‘how to live (or die)’ and especially how to be perceived rather than merely how to be healed.

Although it has become a truism that a patient is more than his/her body or illness, each project Bolaki selected for her book, strongly foregrounds the mind and creativity of the artist and presents the patient (perhaps for some uncomfortably so) as a complex, lively, and creative being. Although the artists and performers deal with death and disorders, they leave a legacy that lives on. Combined with collaboration and public access, the suffering artist-patients nevertheless generate projects that are giving, instructive, tangible, and inspirational, and succeed in blending artful expression and poignant meaning. Perhaps herein also lies the difference between the first wave of medical humanities and the second wave: the former engages in listening and proxy-experiences, while the latter engages in participation and witnessing. This seems to be a logical next step.

What then about those who remain silent, those who don’t want to tell their stories, or those who cannot identify with the narratives already told? To re-phrase Tolstoy, ‘All healthy people are alike; each ill person is ill in his or her own way.’ How can the medical humanities represent the silence that is probably inhabited by the clear majority of those suffering from illnesses? Bolaki’s Illness as Many Narratives importantly reminds us that the content of the narratives might not represent everyone’s experience, but that the need to communicate one’s suffering is universal.

A very minor criticism of the book is that Bolaki assumes familiarity with the chosen materials. Her analyses are comprehensive and convincing, but it would have been good to have a general introduction to each project under discussion. I also felt that her diligent defense of emergent narratives might be preaching to the converted in literary circles, especially since she clearly and convincingly works out what her emergent narratives can do better than other word-based narratives: they solicit dialogues and shape perceptions in a much more public and political way.

Throughout her book, Bolaki underscores—by way of aesthetic, ethical, pedagogical political, and collaborative methods (tools)—the notion of narrative as telling in many forms, forms that favour expressive and evocative representations rather than linear story-telling. The photography, artists’ books, performance art, film, theatre and animation Bolaki introduces in her book reject the ‘cultural narrative of triumph’ (64) and invite instead critical interloping and inter-disciplinary dialogue. Bolaki’s Illness as Many Narratives is an intelligent and illuminating contribution to the field. A short review like this can in no way do justice to the book’s sagacity and importance.

 

Whitehead, A., and A.Woods, eds.  Atkinson, S., Macnaughton, J., and J Richrds, assoc. eds. (2016). The Edinburgh Companion to the Critical Medical Humanities. Edinburgh: Edinburgh University Press.

 

Book Review: True Tales of Organisational Life

6 Feb, 17 | by cquigley

 

True Tales of Organisational Life

Barbara-Anne Wren

Karnac Books Ltd, 2016

ISBN-13: 978-1-78220-189-2

 

Reviewed by Dr Andrew Schuman

 

It’s stories, the psychologist Barbara-Anne Wren reminds us, “that will hold us when nothing else can”. They are humankind’s most effective way of making sense of the world – of organising and giving “a shape to experience”.

The organisation in question, both in the title and at the heart of the book, is the National Health Service (NHS): a gargantuan body employing around two million people. The individuals, working within the service in these straitened times, are facing unprecedented challenges. Relentless waves of financial cuts, along with breathtakingly costly systems of regulation and inspection, have left a workforce more disillusioned and more demoralised than ever before.

Wren’s work as a psychologist and organisational consultant, in a busy London teaching hospital over the past seven years, has been ground-breaking. Rather than seeking the impossible, of  “banishing” emotion and distress at an individual level, her remit has been to “manage meaning and complexity, understand emotional life at both an organisational and individual level, and create spaces in which the unique challenges of healthcare work could be observed and understood.” Some remit.

The strength of Wren’s book lies in her first-hand account of setting up this therapeutic space – in the form of Schwartz Rounds. Originating in America, they consist of a monthly meeting of health professionals, in a forum that is non-hierarchical and deliberately organisation-wide. Their primary focus is on the human dimensions of providing care. Rather than chasing action-points and outcomes, the emphasis in these meetings is on quiet reflection and stillness – storytelling without a means or an end, where “rational and emotional experience have equal permission to emerge”.

At their core is the work of Kenneth Schwartz, a US lawyer, who died of lung cancer in his forties. His own story of diagnosis and treatment was, he writes, “punctuated by moments of exquisite compassion”, [that] “made the unbearable bearable”.  The article he wrote, shortly before he died, serves as a rallying-call:

I cannot emphasize enough how meaningful it was to me when caregivers revealed something about themselves that made a personal connection to my plight. It made me feel much less lonely. The rule-books, I’m sure, frown on such intimate engagement between caregiver and patient. But maybe it’s time to rewrite them…

Our response to his plea must be to support and enable those working in the front-line of the health service – and to encourage and inspire a greater emotional engagement with our patients. As Wren reminds us, psychology’s modus operandi is in “relationship”: “it is dynamic… It works because it moves.”

The protected time and head space of the Schwartz Round give participants permission to open up about the very things that really move them – “what they were proud of, exhausted from”, but also “what saddened and puzzled, infuriated and frightened, humbled and inspired them.”

Two-thirds of the way through the book, we get to its raison d’etre: a collection of seven stories, garnered from the many Schwartz Rounds that Wren has facilitated. These “true tales” (of the title) illustrate the limitless ways in which a particular story is able to “move”, in all senses of the word. They tell a tale, but they show us a greater truth: that stories “will hold us when nothing else can”. With their beginnings, middles and ends, they can bring order and sense – and “sustain us”. Some of the stories arise from clinical issues, others from tensions that can occur between our personal and professional lives; still more concern conflicts at an organisational level.

One of them concerns a “macho” transplant surgeon, who needed to travel to another hospital in order to harvest an organ, before returning gung-ho, aware only of “the happy anticipation of the expectant, hopeful patient” whose life he would be saving – and “ready to demonstrate his skill and authority”. As the successful retrieval surgery came to an end, and the surgical drapes were removed, there was a rustle of paper below the body of the child donating the organs – and a teddy bear tumbled to the floor. The teddy bear was the very first thing the child had been given when he was born; the paper some pages on which family members had imprinted their hands, so that the child would die “in their arms”.

As soon as this was explained to the transplant surgeon, “a ring of steel around his emotions was broken”. By the time of the Schwartz round, the surgeon succeeded (only just) in “gather[ing] up all his energy”, and recounted his experience – including the detail of the teddy bear.

Reading this stopped me short. It also brought to mind the words of the American writer, Maya Angelou: “There is no greater agony than bearing an untold story inside you”. The surgeon’s burden had been made lighter by the telling of his tale, while those listening, bearers of this confessional, could respond only with silence.

Wren unpacks each of the stories she gives us – in this particular case, reflecting on the challenge for clinicians of balancing feelings of sadness and grief with “the business of living”. We need to know, in order to function for the good of all of our patients, when to block each of them out. Both feelings are, of course, essential.

Another tale looks at the case of an abusive patient – but from the perspective of the staff looking after her. As Wren points out, the focus of the Schwartz Round is more on effects than causes: here, the focus was on the impact of the abuse on the individual staff members, and the “reality of what they have to withstand”. Faced with this situation, we can sometimes summon up compassion and creativity; at other times, we’re all too aware of the limits of our compassion. But Wren gets the participants to “question the balance between what is being required of them, what they have left to give, and the containment and support they are being offered” – while appreciating, and exploring, the ways within the group of dealing with such abuse.

The book is not without faults. The editing could have been a little tighter. At times, Wren’s prose tends towards the mystical. Elsewhere, her generalisations can seem weak. “Everyone”, she tells us, “wants to be a psychologist, or is one, or knows one”. Her statement, that patients in hospital “[a]ll have families who want them back” seems, sadly, a tall tale.

But True Tales is good on the practicalities of voicing disharmony in the workplace, and of seeking ways to resolve these conflicts through the timeless alchemy of stories and story telling. “Ever since we were little, the stories have kept the darkness at bay. That and each other will get us through.”

 

Dr Andrew Schuman

Dr Kenyon & Partners,

19 Beaumont St., Oxford, OX1 2NA

 

andrewschuman@doctors.org.uk

 

 

Book Review: This Way Madness Lies.

1 Feb, 17 | by cquigley

 

This Way Madness Lies. Madness and Beyond. By Mike Jay. London: Thames and Hudson, 2016.

Reviewed by Dr Allan Beveridge

 

Published to accompany the recent Wellcome Collection Exhibition, ‘Bedlam: the asylum and beyond’, this book is packed with over 600 photographs and illustrations drawn from the archives of institutions in Europe and America, as well as with art work by patients from a wide range of different eras and locations. The book is, itself, an ‘object’ and deserving of close study. At first sight, it seems a marvellous exhibit. Crammed with images from a bewildering variety of sources, it entices the viewer and, perhaps intentionally, disorients them with the clash of visual material. There are countless black and white photographs of asylum inmates, architectural plans of institutions, portrayals of psychiatric treatments such as the strait-jacket, lobotomy and malarial therapy, magazine advertisements for medication, cinema posters of asylum horror movies, anti-psychiatry placards, and a selection of art by well-known artists such as Hieronymus Bosch and Theodore Gericault, as well as celebrated patient-artists like Richard Dadd, Louis Wain and Adolf Wolfli. The organisers of the project have been able to mine a very rich seam of archival material and, possibly, they have been loath to exclude any of it from the book. The result is that while there are numerous large colour reproductions, there are also too many pages where multiple images have been crammed onto the one page. For example, page 16 has fifteen small black and white images of scenes from the story of Bethlem Hospital. The pictures are simply too minute and poorly defined to be properly viewed and appreciated. This is the fate of many other images which are bundled together onto the one page. This is frustrating because from what one can make out of the pictures, they are full of historical and aesthetic interest.

A more serious concern is that of the ethical questions raised by showing photographs and images of patients, often in distressed and degrading conditions. Should such images be shown? The men and women featured were not able to give consent. Should their only appearance on the historical record be that of their time as an asylum inmate with no reference to other aspects of their life such as, for example, being in a relationship, being a parent, or having an occupation? If the photographs are displayed, should the patients be identified by name or should they remain anonymous? Does anonymity serve to protect the identity of the patient or to make them even more of an ‘object’, lacking individuality?  Are some images too demeaning and disrespectful to the subject to be exhibited? These are difficult ethical questions which have provoked discussion amongst fine art commentators, historians and psychiatrists: they are no easy answers. Nowhere in the book is there a discussion of these vexed issues or even an acknowledgment that the presentation of this material may be problematic. Further, these images and photographs of patients were created for a variety of purposes. Some clinicians, such Sir Alexander Morison wanted to delineate what he saw as the particular ‘physiognomy’ of different types of mental conditions and paid professional artists to accompany him to asylums to make sketches of selected inmates. Charcot sought to capture the apparently spontaneous ‘hysterical’ behaviour of his patients at the Salpetriere, but research suggests patients adopted the poses expected of them. Other photographs of patients participating in the activities of the asylum were meant to advertise the benefits of the institution. Again, apart from the accompanying captions, there is little discussion of this or the particular context in which each image was commissioned.

One is reminded of the well-known episode in the history of Bethlem Hospital, or ‘Bedlam’ as it came to be known, where the general public were allowed to visit the asylum to view the inmates. Some saw it as educational, whilst others saw it as entertainment and a source of titillation. This practice was eventually stopped in 1770, but one is left with the uneasy feeling that this book in some ways represents a modern version of visiting Bedlam. At least the 18th century inmates were able to engage with the public and give an account of themselves. Here the patients, frozen in images and photographs – ‘mute inglorious’ –  have no means of putting forward their side of the story.

The writer, Mike Jay provides the text of the book. Generally he provides a balanced and readable account of this contentious area. Neither telling a tale of benign progress, nor, contrastingly, a catalogue of the disasters inflicted on the mentally ill by the supposedly-evil empire of psychiatry, Jay prefers to see the history of psychiatry in terms of a pendulum swinging between psychological and physical approaches to madness, and between institutional and community responses. He is thus able to see the good and bad in different periods. He is less inclined than Andrew Scull, whose recent volume, Madness in Civilisation he cites approvingly, to perceive the undoubted abuses and wrong-turnings of psychiatry in terms of wicked and self-serving clinicians, and more as a result of their misguided intentions and the sheer complexity of mental illness.

The book is divided into sections: the 18th century madhouse; the 19th century lunatic asylum; the 20th century mental hospital; and ‘beyond the asylum’. At the centre of the narrative is the story of Bethlem and its founding in the thirteenth century, which Jay goes on to trace through its evolution as a madhouse, an asylum and, finally, a modern day hospital. As Jay is well aware, Bedlam, or rather the mythology of Bedlam, has long been part of our folk-lore and culture. John Webster, Jonathan Swift and William Hogarth all depicted the institution. Jay is good on cultural representations of Bethlem and points out that, from an early stage, these portrayals bore little resemblance to the actual hospital. He mentions famous Bethlem residents such as James Tilly Matthews who drew up a visionary architectural plan for the new Bethlem which uncannily anticipated the building that was eventually created. He mentions, too, Richard Dadd, the parricide, whose strange and highly detailed paintings were, arguably, more striking than the works he created before his incarceration.

Jay also takes in developments in the rest of Britain, as well as in Europe and America. He charts the failure of the 19th century asylum which became over-crowded with incurable patients, the development in the 20th century of the mental hospital with its hope that physical treatments would return patients to their homes, and community approaches in our own time which have been ham-strung by a lack of funding. He examines the rise of pharmacology and alternative therapies. As in previous times, a variety of therapies crowd the market-place.  Jay places a particular emphasis on the story of Geel, the Belgian town where for many centuries patients have lived with local families and worked in the community. Jay sees this example as the way forward in our post asylum world.

A recurring trope in Jay’s account of the history of madness is that the world is one vast Bedlam.  He quotes the campaigner, Thomas Tryon observing in 1689: ‘The world has become a great Bedlam, where those who are more mad lock up those who are less’. (p. 52) The 19th century alienist, Dr John Conolly greatly extended the list of those he felt would benefit from asylum care. As Jay wryly observes: ‘The logic of the perfect asylum, taken to its logical conclusion, was that the entire world should become one.’ (p. 120) At the beginning of the 20th century, Jay argues,  madness seemed to have escaped the asylum and taken root in the culture at large as an entire generation was slaughtered in the insanity of the First World War. He concludes, somewhat provocatively:  ‘In the wake of the asylum, the world has become a great Bedlam’. (p. 218) Whether or not one agrees with this, it does serve to emphasise that the difference between sanity and insanity is perhaps not as marked as we would like to imagine.

The book, then, is a mixed achievement. The images veer between the stunning and the indistinct, and there is a curious lack of an ethical context to them. However, Mike Jay’s text is, in the main, even-handed, and for those new to the field, an accessible and well-written introduction to the history of psychiatry and madness.

 

Dr Allan Beveridge

Book Review: Thinking in Cases

23 Jan, 17 | by cquigley

 

Thinking in Cases

by John Forrester. Published by Polity, 2016.

Reviewed by Dr Neil Vickers

 

John Forrester, who died in 2015, was the most original historian of the human sciences of his generation. His great love was the history of psychoanalysis – he was for 10 years the editor of the journal History and Psychoanalysis – and he published no fewer than 4 major books in that field, including the classic Freud’s Women (which he wrote with his wife, Lisa Appignanesi).

Thinking in Cases is the first of two books to be published posthumously, the second being the monumental Freud in Cambridge (co-authored with Laura Cameron), due out later this year. It comprises six essays written over the last two decades on what he memorably termed ‘case-based reasoning’. Forrester, along with many historians of science, believed that case-based reasoning had embedded itself in a variety of disciplines, in ways that experts were often reluctant to acknowledge. It might be thought that in the era of evidence-based medicine, medical education no longer needs the case. Yet, as Forrester argues in his classic essay, ‘If P, Then What? Thinking in Cases’ (1996), novice practitioners learn their science by absorbing a handful of standard experiments from scientific textbooks. These case studies – for that is what they are – serve not only to make the underlying principles more memorable, they also provide something like a shared professional memory.

Much of Forrester’s thinking on case-based reasoning was informed by his decades-long engagement with the work of Thomas Kuhn, with whom he studied in the early 1970s. The most brilliant essay in the book (‘On Kuhn’s Case’) treats the evolution of Kuhn’s thought as a case study in how the philosophy of science actually works at an individual level. Kuhn, it turns out, came from a family that was steeped in psychoanalysis. His grandmother had analysis in Cincinnati with Alfred Adler, sometime in the 1910s or early 1920s. His mother edited some of Karen Horney’s works. And most important of all, he twice underwent psychoanalysis himself, first (briefly) as a child, and again as an adult, between 1946 and 1948. The end of this second analysis coincided with two great changes in Kuhn’s life. He was admitted into the Society of Fellows at Harvard which enabled him to abandon his career as a theoretical physicist and to become a historian of science instead. And he embarked on a marriage that lasted 30 years. He decided to abandon physics for history when he read Aristotle’s Physics. At first he was baffled by the great man’s obtuseness. How could someone who had written so penetratingly on so many other subjects have got the laws of the physics so wrong? But one day it dawned on him that Aristotle was investing concepts like ‘motion’ with completely different meanings from the Newtonian ones he had learned as a boy, and that, once he had made allowances for this altered usage, Aristotle’s physics not only made sense but was far in advance of its time. This Gestalt shift in his own thinking was the first instance of the famous ‘paradigm shift’ which became the master idea of Kuhn’s book The Structure of Scientific Revolutions (1962). Forrester leaves us in no doubt that it was the result of analysis. In an interview published in 2000, Kuhn stated that it was while he was in analysis that he learned ‘to climb inside people’s heads’. He recognised that this ability was central to his work as a historian of science and that for this reason he owed psychoanalysis ‘a tremendous debt’, even though he didn’t much enjoy being a patient. The Aristotle epiphany occurred while he was in analysis. Forrester points out that Kuhn’s method was both individualistic and psychologistic. Kuhn called himself an internalist historian of science because of his overriding preoccupation with the problems his subjects were trying to solve. The historical contexts in which they tried to solve them were a secondary matter. But he was an internalist in the more informal sense that he worked by climbing into other people’s heads. In the same interview Kuhn recalled feeling he could ‘read texts, get inside the heads of the people who wrote them, better than anybody in the world’. These other people were encountered as auxiliary selves – extensions of himself. Forrester quotes several anecdotes Kuhn told about himself in which new selves – famous scientists all – would arise almost in the manner of out-of-body experiences.

The other highlights of the book for me were two pieces on the LA analyst, Robert J. Stoller (1924-99). The first puts forward an extended speculation concerning Stoller’s analysis of a woman on whom he conferred the pseudonym Belle. Belle is the protagonist of one of Stoller’s best books, Sexual Excitement: The Dynamics of Erotic Life (1986). The turning-point in Belle’s analysis occurred when she described a daydream she’d nurtured from childhood in which a figure called The Director instructed her to humiliate herself sexually before a group of adults (and sometimes animals). Stoller was bothered by what he took to be his patient’s seductive behaviour towards him. It was only in retrospect he realised she was pressing him into the role of the Director. (Belle’s mother was a famous Hollywood actress who took up with a number of Directors. The injunction to perform was everywhere in family life.) Forrester suggests it was from Belle that Stoller drew his controversial theory that sexual excitement ultimately depended on hostility. He suggests that the book detailing her case history, written years after her treatment ended, was an attempt to model a more benign form of watchfulness for her. Stoller consulted Belle over every draft of the book and gave her carte blanche to alter anything she didn’t agree with. It was sobering for them both to discover that they had very different views of what had been valuable in their work together. Forrester suggests that the writing of the book was the decisive part of the treatment for through it he showed her that he didn’t need to be entertained by her. ‘If he had not published his book,’ he writes, ‘her analysis would have been a failure.’

The second Stoller-related chapter (unpublished until now) is a paper on ‘Agnes’, one of the world’s first male-to-female transsexuals. Agnes’s case was first described in Harold Garfinkel’s Studies in Ethnomethodology (1967) but Garfinkel took Stoller on as a co-author as he was one of Agnes’s psychiatrists. Agnes claimed to have been born intersexed and, starting in the late 1950s, went through an arduous vetting procedure lasting many years in order to obtain surgical gender reassignment. Many years later she told Stoller that from the age of 12 she had in fact taken her mother’s hormone replacement medication which resulted in her acquiring female secondary sex characteristics. Garfinkel the sociologist thought that Agnes’s attempts to pass as female shed light on what maleness and femaleness were, as socially-credited qualities summoned up into being every moment of every day. Her deception about her history was just another instance of what she had to do to ‘pass’. Stoller on the other hand originated the concept of core gender identity on the basis of his treatment of Agnes. He met Agnes’s mother and discovered that she had regarded herself as male from the age of eight and that she had passed her own ambivalence about her gender identity on to her adored son, whose transformation into a woman she supported wholeheartedly.

Thinking in Cases is an ideal introduction to Forrester’s thought, containing some of his most important papers. He combined a scientist’s delight in devising new methods to understand recondite things with an exceptionally acute sense of the role of contingency in intellectual discovery. These strengths were central to his style of reasoning and, as these pages testify, made him one of a kind. Everyone with an interest in the medical case history and its wider ramifications should read this book.

Book Review: The Edinburgh Companion to the Critical Medical Humanities

17 Jan, 17 | by cquigley

9781474400046 

The Edinburgh Companion to the Critical Medical Humanities

edited by Anne Whitehead and Angela Woods (general editors) with Sarah Atkinson, Jane Macnaughton and Jennifer Richards (associate editors). Published by Edinburgh University Press, 2016.

Reviewed by Josie Billington, University of Liverpool

 

‘Critical medical humanities’, say the editors of this volume, marks a ‘second wave’ in the field. First-wave medical humanities was characterized by an emphasis on ethics, education (championing the arts in particular), and the subjective experience of illness, diagnosis and treatment. The second wave, by contrast, ‘energised’ by the social sciences, turns to interrogate the ‘primal scene’ of ‘mainstream’ medical humanities – the clinical encounter between doctor and patient, more specifically the diagnosis of cancer. Seeking a ‘thicker’ understanding, its focus is not ‘the lived body of the patient qua patient’ but the political, social and cultural contexts and factors (race, class, gender, sexuality, debility) which underpin or influence the illness experience. In thus self-consciously positioning itself as a foundational text of the new wave, the Companion, as we shall see, is opposed to the old binaries of patient/doctor, illness/disease, medicine/humanities within an orientation which saw the medical humanities as a ‘benign helpmeet’ to biomedicine. But this text is not seeking, therefore, to ‘create new binaries’ (between research and education, practice and theory). Rather, it stresses the ‘mobility’ and ‘fluidity’ of critical medical humanities offering ‘an encapsulation of the field’s current momentum’ as an area of inquiry that is ‘highly interdisciplinary, rapidly expanding and increasingly globalised’.

The book achieves this latter mission admirably. Formally organized into four thematic strands – ‘Evidence and Experiment’, ‘The Body and the Senses’, ‘Mind, Imagination, Affect’, ‘Health, Care, Citizens’ – the book’s introduction nonetheless acknowledges, and explicitly offers, numerous alternative trajectories. Among these, ‘Spatial Pathways’ emphasizes the value of social scientific methodologies within a global health context: Hannah Bradby’s and Sarah Atkinson’s chapters, for instance, on the migration of medical care resources (staff and organs) and Lucy Burke’s and Rebecca J. Hester’s on the politics and institutionalization of (respectively) ‘care’ and cultural ‘competence’, offer exemplary demonstration of how fine-grained interdisciplinary approaches (comprising history, sociology, human geography, labour and health studies, feminist and literary approaches) are critical to an understanding of the forces which shape health outcomes and policies. ‘Disciplinary pathways’ fulfils the volume’s remit of ‘extending to arts disciplines which have not been so influential to date’, the visual arts in particular. Suzannah Biernoff’s chapter on the ‘cultural scripts for being in pain’ (religious and secular) to which art from past ages gives access, Rachael Allen’s on the artist’s unique engagement with the body in the anatomy lab, and Edward Juler’s on the surrealists’ depiction of viscera as the dark and amorphous centre resisted by the ‘hygienic’ ego, emphasize the role of the visual arts in ‘reconceptualising the body and probing its position and status’ within biological constructs.

For all these second-wave emphases, the most dominant of these pathways across the volume is a rather familiarly ‘Historical’ one (isn’t that also a characteristic emphasis of mainstream medical humanities?), though the offerings themselves are fresh and rich. Corinne Saunders suggests that the literary representation of visionary transport and voice-hearing in medieval texts offers an alternative model to the contemporary diagnosis of psychotic symptom. In relation to the early modern period: Cynthia Klestinec explores the relation of touch and trust in the physician-patient dynamic and its contribution to the historical development of patient compliance; Jennifer Richards and Richard Wistreich recover what has been rendered invisible to modern medicine through the dominance of visual and written information – the primacy of the voice in the transmission of knowledge;  Lauren Kassell considers how digitization of medical records of the period, themselves newly driven by the advent of paper technologies, beg question about the kinds of evidence which constitute medical history. Looking back to the nineteenth century: Heather Tilley and Jan Eric Olsén find a valuable perspective on constructions of disability in pedagogy relating to blind pupils; Peter Garratt contends that the period’s shift away from metaphysical explanations for art to those of embodied psychological aesthetics offers valuable insights for contemporary models of bibliotherapy; Lindsey Andrews and Jonathan M. Metzl argue that nineteenth-century imaging practices help make visible a racial legacy within present-day imaging technologies.

I would add to the editors’ suggested pathways an Activist or Interventionist one, as this characterizes, for example, Lisa Guenther’s searing elucidation of the nexus of political, legal and medical power which legitimizes the barbaric practices of lethal injection for death row prisoners, as well as Bethan Evans’ and Charlotte Cooper’s challenge, via Queer and Disability Theory, both to dominant medicalised accounts of fatness and the tendency hitherto of conventional medical humanities to exclude or neglect activist movements. But I would also stress that ‘first-wave’ or ‘mainstream’ concerns are just as readily traceable. Ethical, for example, is an emphasis which (implicitly or otherwise) runs through William Viney’s study of twin research and the dangers inherent in the idea of ‘natural laboratories’; Luna Dolezal’s  argument that the increasing opportunities for technological enhancement of the human body urgently require a range of humanist perspectives to grasp the physical and existential toll, as well as the satisfactions, of morphological freedom; and David Herman’s contention, in relation to the value of animal companions for people living with autism, that a proper understanding of selfhood as situated within wider webs of creatural life, demands a new kind of ‘interdisciplinary and collective’ story. Experience of illness is at the centre of Jonathan Cole’s and Shaun Gallagher’s fascinating demonstration of neuroscientific and phenomenological  understandings working hand in hand within a clinical setting to de-pathologise chronic conditions and contribute to insights of therapeutic benefit; and, with a more decidedly historical inflection, Ian Sabroe and Phil Withington transpose the Renaissance-humanist conception of ‘counsel’ to modern-day clinical consultation to highlight the value of the emotional space opened by genuine dialogue between doctor and patient.

The really valuable aspect of this book, in fact, is its eclectic inclusiveness – ranging (as Patricia Waugh puts it in her helpful afterword to Part 1) from ‘the performatively paratactic and experimental to scholarly sobriety and sharp socio-cultural critique’ – enabling one to find the contemporary medical humanities one is looking for. This is perhaps the principal reason why some of the terms and concepts used to tie these strands together prove problematic.

‘Critical’, for example, usefully signals the influence upon second-wave medical humanities of twentieth-century post-war critical theory. But the influence of Foucauldian or feminist thinking is, from the evidence of this volume, a scattered and partial one and markedly less visible than the historical scholarship which, as mentioned above, predominates. Critical, in this particular sense, then, does not really hold the new medical humanities together. And, as Martyn Evans forcefully points out in his introduction to Part 3, a progressive critique is visible in the mainstream of medical humanities and traceable back to forebears in medical ethics, philosophy and sociology of medicine: indeed, ‘humanities have been seen as critical in the sense of being vital to medicine since long before medical humanities emerged as a discrete field of study’. Brian Hurwitz and Victoria Bates, on the place and history of narrative in contemporary clinical practice, and the challenges to models of narrative coherence offered by Laura Salisbury’s study of ‘disrupted, disordered’ aphasic speech in relation to the expressive practices of literary modernism and Jill Magi’s, Nev Jones’s and Timothy Kelly’s experimentally ‘cut up’ rendering of psychotic subjectivity, all – in their distinct and partly opposing ways – continue that trajectory. This is valuably the case, too, in relation to Rosemary J. Jolly’s contention that literary narrative ‘has a unique capacity to explore transcultural encounters of radically differing conceptualizations of wellness and disease’ and Anna Harpin’s analysis of the power of Shakespearean tragedy in a high secure setting (Broadmoor) ‘to relocate the patients’ index offences back within the continuum of human experiences’. The texts and contexts have changed or expanded but, as Jo Winning says in another of the overviews which usefully punctuate the Companion, these chapters ‘collectively and forcefully remind,’ as medical humanities has always sought to do, ‘that biomedical discourse is not the only knowledge base’.

While the volume thus witnesses and acknowledges these continuities, what critical medical humanities fundamentally represents nevertheless, the Companion asserts, is a displacement of the ‘common calculus’ within medical humanities whereby the biomedical ‘registers as the cold and deadening engine of facts and hard-nosed pragmatism’ and the humanities as the ‘non-reductive, life-affirming context expert’, where ‘all affect and feeling are to be found’. Thus, the new ‘E’ proposed as replacing Ethics, Education and Experience in critical medical humanities is that of ‘Entanglement’. Originating in science and technology, as Des Fitzgerald and Felicity Callard explain in their polemical chapter at the opening of Part I, the concept rejects the notion of separable units with determinate boundaries (persons, disciplines, ideas) whose telos is integration, in favour of a dynamic of intersection, inseparability, interdependence. ‘We cannot easily divide the practices (or objects) of “science” and “medicine” from the practices (or objects) of social and humanistic inquiry. We do not, as scholars from various disciplines, bring our objects and practices to one another through a kind of free-trade agreement; rather we re-enter a long history of binding, tangling and cutting.’ This thinking has self-evident applicability to the exemplary chapters which immediately succeed it: Annamaria Carusi’s on computational modelling of biological processes (a hybrid of interconnected experiments, equations, simulations) which underscores ‘the continuities between science and art as expressive modalities of meaning which do not merely communicate pre-existent meanings but forge new styles of knowing’; and Volker Scheid’s tracing of the genealogy of holism, a concept less emergent from, than retrospectively ‘accommodated’ to, ancient Chinese thought under mid-twentieth century communism, and subsequently assimilated to a Western systems biology. Entanglement as a conceptual frame for diverse interdisciplinary methodologies also promises, it is true, robust theoretical backing for a discipline which, as Stuart Murray points out, is often unfairly categorized as representing ‘a soft humanities approach’.

Still, there is something unconvincing about the way in which the notion is self-consciously introduced into separate chapters in order intellectually to stitch together these highly individualized offerings. Not only does the effort after conformity to the ‘critical’ line fly in the face of the ever-indeterminate heterogeneity which the concept of entanglement is intended to represent: in its recurrence, the idea begins to seem rather modish, especially when offset by the wealth of historically-oriented chapters which give priority to time-honoured practices and thinking over the latest scholarly fashions. The real paradox, however, is that what is potentially most valuable about entanglement in the context of medical humanities – its engagement with the ‘messy’, the ‘knotted’, its ‘staying with the trouble’ – is still best (or most authentically) demonstrated in this volume by examples of lived experience. So, for instance, when Christoph Rehmann-Sutter and Dana Mahr  show how a bio-medical construct inaccessible to direct experience – the genome – is nonetheless intrinsically part of the experience of those individuals who embody and ‘live’ it; so, too, when Jane Macnaughton and Havi Carel offer a compelling account of breathlessness as engaging cultural, emotional and existential dimensions which while ‘not part of the language of the clinic, are central to the patient’s experience’, thereby powerfully underscoring their contention that bridging this epistemic gap can challenge and broaden the evidence base on which symptomology is addressed clinically. These are exemplary models for what Macnaughton calls ‘a critically engaged “helping” medical humanities’, in which the ‘moral imperative’ is to improve understanding not only in scholarly/disciplinary fields, but also ‘in the clinic’. The primal scene, or the lived illness which it represents, is not so easy to leave behind, nor so necessary or desirable to reject, as the editorial introduction proposes. Indeed, medical humanities without the patient qua patient at its centre, Macnaughton appears to suggest, is in danger of facing an ethical dead end. Fortunately, the evidence of this volume is that second-wave medical humanities still has a strong orientation towards, as Callard and Fitzgerald put it, that ‘most central object of the medical humanities’ – life.

 

 

Related reading – themed issue on Critical Medical Humanities:

http://mh.bmj.com/content/41/1.toc#Criticalmedicalhumanities

 

Book Review: Re-Thinking Autism

9 Jan, 17 | by cquigley

9781849055819

Re-Thinking Autism: Diagnosis, Identity and Equality. Runswick-Cole, Katherine, Mallett, Rebecca, and Sami Timimi (Eds.). London and Philadelphia: Jessica Kingsley Publishers. 2016.

 

Reviewed by Jennifer S. Singh

Assistant Professor of Sociology at Georgia Tech and author of Multiple Autisms: Spectrums of Advocacy and Genomic Science

 

Is any stable and enduring definition of autism possible? Is autism a disruption of what it means to be human? Is it possible to imagine services differently? These are just some of many critical questions addressed in a timely edited book, Re-Thinking Autism: Diagnosis, Identity and Equality. The nineteen authors who contributed to this volume critically engage with “this thing called autism,” in order to disrupt the dominant biomedical model surrounding the diagnosis, treatment, and understanding of autism. The editors describe the volume as a collection of “critical autism studies,” an emerging field concerned with whether the diagnosis of autism is scientifically valid and useful for the lives of people who are labeled with an autism diagnosis, as well as their families and allies. The roots of this approach are cross-disciplinary and draw from a range of perspectives such as critical psychiatry, disability studies, cultural studies, and the social sciences. This three part volume has something for everyone – parents of children with autism, practitioners who provide various of services to people living with autism, and researchers and academics in a range of fields such as psychology, psychiatry, disability studies, cultural studies, or education. The scholars are primarily located in the UK, with a few authors from Canada, Australia, and Brazil. This assemblage of disciplinary perspectives and geographic locations provides important insights into the scope and depth of how researchers are thinking about autism through a critical lens.

The first part of the book grapples with the question: What is autism? It starts with a personal account from Katherine Runswick-Cole, who acknowledges the dilemma of her status as a mother-researcher and the risks of not challenging dominant biomedical frameworks of autism. The focus of her concern, like much of the other authors in this volume, is not about autism itself, but “the systems, attitudes, and environments that disable people with autism” (p. 23). She eloquently argues that “this thing called autism” is a contemporary cultural construct; a narrative that dominates or drowns out all other stories of autism that can be told. The next two chapters focus on the history of the changing definition and diagnosis autism and the wide variation of symptoms that exists in any one person with autism. Sami Timimi and Brian McCabe demonstrate how the biological understanding of autism has not become any clearer since it was first described by Leo Kanner in the 1940’s. These authors suggest that autism spectrum disorder is not a coherent biological construct and lacks conceptual clarity. Richard Hassall critically asserts that there is “no single distinctive psychological or neurodevelopmental disorder represented by the concept of ‘autism’” (p. 49). Hassall challenges us to re-think whether autism is a ‘natural kind’ of disorder, which conceptualizes autism as fundamentally biological deficiencies. This predominant framework reinforces those with the label of autism as essentially different and abnormal. The last chapter in Part 1 is an empirical study of public negotiations surrounding the category of autism in Brazil, including an analysis of the polarization within the Brazilian mental health community of the ontological status of autism (mental disorder or disability) and representations of autism in Brazilian printed media and online social networks. These different lines of analyses demonstrate how autism is no longer exclusively in the domain in medical science and extends to various other public spheres, including parent activists, lawyers, and virtual social networks. These alternative stories disrupt the ontological status of autism as a ‘problematic category.’

Part 2 of the book offers the most interesting critical analyses with a focus on deconstructing autism. It starts with a brilliant chapter by Anne McGuire who offers a critical and nuanced inquiry of the normative and normalizing nature of violence against people with autism promoted by mainstream news and advocacy organizations. McGuire examines the dominant discourse of ‘people living with autism,’ which discursively frames autism as some ‘thing’ separate from the fully living human person. Other chapters in this section also begin to question the framing of autism in the context of what it means to be normal and human. Kim Davies critiques the deficit Theory of Mind model of autism to expose how this ablest framework places autistic people at the ‘edges of the boundary of human being-ness” due to their lack of the very qualities that make us human (p. 133). Dan Goodley also begins to “dissect humanity” through the lens of autism and its relationship with the categorization of the human being. Drawing on post-colonial theory Goodley deconstructs how autism weaves in and out of both the ethnoclass man (embodied in the white, heterosexual, American, able, male) and those engaged in wider human struggle. His conclusion holds a similar sentiment that is thematic throughout this section, “any study of autism must also engage with the simultaneous study of the human” (p. 157).

Part 3: Changing Practice, is the largest section and made up of seven chapters that contend with whether the label of autism adds anything to how various services and practices of autism are experienced from a range of perspectives and disciplinary practices such as education, psychotherapy, psychiatry, or neuroscience. A central theme in this section is that professionals (e.g., educators, therapists, clinicians, or researchers) need to “resist the dehumanizing attacks on personhood that expel children to the margins” (p. 199) and “be committed to the qualities of people, not as autistic, but as human beings in shared moments of time and space” (p. 249). Gail Simon describes this shift in professional practice as having a “reflexive curiosity” about new ways of being with people with autism that opens up opportunities for meaningful and fruitful dialogue (p. 285). As I argue in my own research on the excess funding and research in autism genetics research in the U.S. (Singh, 2016), Simon and other authors highlight how many avenues of research that would be beneficial for people diagnosed with autism are missed or overlooked such as long-term and quality of life issues.

Although this volume brings much needed attention to alternative ways of knowing autism and critiques of the social construction of autism in relation to what it means to be “normal” and “human,” this is not the first attempt to map out a field of “critical autism studies.” Joyce Davidson and Michael Orsini edited a 2013 collection called Worlds of Autism: Across the Spectrum of Neurological Difference. Their conceptualization of critical autism studies is similar to Re-Thinking Autism and is based on an interdisciplinary commitment to “develop analytic frameworks using inclusive and non-reductive methodological and theoretical approaches to study both the nature and culture of autism” (p. 12). It is different in that it focuses more on how power relations shape the field of autism and how narratives of autistic individuals are becoming actors with agency that disrupt assumptions of normalcy and (cognitive) difference. Although power is implicit in many of the chapters in Re-Thinking Autism, the mention of power: who has it, how is it used, and how it affects what we know and understand about autism is less explicit, with a few exceptions. Also, unlike the serious commitment to situated knowledge of autistic people themselves in Worlds of Autism, a commitment to include autistic subjectivities are less apparent in Re-Thinking Autism. Finally, despite the subtitle, Diagnosis, Identity and Equality, there is a limited focus on inequalities that exist in access to early evaluation and services that are apparent based on social class, race and gender. I was surprised of the limited discussion of broader structural inequalities that enable experiences, autism constructs, levels of resistance, and/or cultural and symbolic meaning of autism. These voids are by no means limitations of the volume, but rather speak to the broad scope in which critical autism studies can engage and the need for further analyses on questions this edited volume raises on how we can continue to “re-think autism.”

 

Singh, Jennifer S. Multiple Autisms: Spectrums of Advocacy and Genomic Science. Minneapolis: University of Minnesota Press. 2016.

Davidson, Joyce, & Michael Orsini (Eds.). Worlds of Autism: Across the Spectrum of Neurological Difference. Minneapolis: University of Minnesota Press. 2013.

Runswick-Cole, Katherine, Mallett, Rebecca, and Sami Timimi (Eds.). Re-Thinking Autism: Diagnosis, Identity and Equality. London and Philadelphia: Jessica Kingsley Publishers. 2016.

Book Review: A Smell of Burning

6 Dec, 16 | by cquigley

 

a-smell-of-burning-jacket

 

A Smell of Burning

By Colin Grant

London: Jonathan Cape, 2016

 

Reviewed by Dr Maria Vaccarella, University of Bristol

 

Colin Grant’s A Smell of Burning conveys a powerful message: being diagnosed with epilepsy means being associated with an intricate and captivating cultural history. Patients and families are connected to centuries of prejudice, transcendental explanations, scientific, as well as social, experiments, and works of art. Grant wrote this book as an elegy to his younger brother Christopher, who died of SUDEP (Sudden Unexpected Death in Epilepsy) in 2008; he, thus, joined David B. and William Fiennes, who in Epileptic (1996 – 2003) and The Music Room (2009) respectively, explore the impact of epilepsy in their brothers and in their families at large. It is, indeed, endearing to find resonances between these accounts, despite their different familial backgrounds and the different medical support available in each case. When Grant admits in his introduction that he “often wandered where Christopher went in those moments” (p. X), we are reminded of the many, imaginative spatial metaphors, beautifully rendered in the woodcut style of David B.’s drawings: for example, the original French title of his graphic memoir, L’Ascension du Haut Mal, reconfigures epilepsy as a disproportionately high mountain the two brothers attempt to climb throughout the book. But time is equally important in grasping the multifaceted concept of epilepsy: Grant learns in medical school that “the answer to your patient’s present condition lies in the past” (p. 2), which gives way to his retracing of the past of epilepsy in the book, interwoven with recollections of his brother, in a blending of medical history and biography, reminiscent of the more conscious pastiche technique used by Fiennes in The Music Room. Grant’s medical training, in actual fact, adds some intriguing nuancing to this shared plotline, as for example when he confesses his fascination, mixed with revulsion, in witnessing one of his patients having a tonic clonic seizure.

The interplay of spatial and temporal dimensions in making sense of epilepsy, despite its inherent ineffability, provides the basis for a secret language between the two brothers: coded expressions, such as “you had a visitor” (p. 68) or being “not in Kansas anymore” (p. 157), are genuinely tender glimpses into the reality of living with epilepsy. These enlightening, heartfelt snapshots into Christopher’s life are, unfortunately, almost obfuscated by the plethora of wide-ranging vignettes of famous people associated with epilepsy, from Julius Caesar to Neil Young. The limits of retrospective diagnosis and the problems of glorifying rhetorical catalogues of outstanding patients are well-known: it is, then, uplifting to learn that Christopher himself “was not comforted by the roll call of famous historical figures that were thought to have had epilepsy” (p. 22), though the permanence of these tropes in the book remains disorienting.

The tension between a more public, maybe even political, facet of epilepsy and its more intimate manifestations is palpable throughout the text: Grant moves among milestones in the history of epilepsy understanding and treatment, in search of an overarching meaning, which could probably give him (and his readers) a privileged access into Christopher’s brain and mind, into his mysterious unconscious peregrinations, as well as into his more conscious decisions, such as, for example, his intermittent adherence to his anti-epileptic drug regime. Each chapter in the book relies on these connections between the macro and micro dimensions of epilepsy, sometimes resulting in a slightly skewed perspective: by means of an example, Grant’s reading of “the fragility of Myshkin’s epileptic body to mirror the underlying fissures of Russian society” (p. 56) paradoxically detracts from Dostoevsky’s pioneering subjective contribution to the narrative use of epilepsy.

There are, indeed, a few underdeveloped points in A Smell of Burning that call for a more conscientious elaboration. Seizures are constantly described with reference to the old-fashioned vocabulary of grand mal and petit mal, possibly in the attempt to conjure up well-known social perceptions of epilepsy; yet, the downside of preventing the circulation of the more up-to-date and sophisticated medical terminology is not contemplated. Along similar lines, Grant brings in the testimony of writer M., who defines himself as “epileptic” (p. 204 and 210) to signify how pervasive and disempowering his condition is. Accordingly, Grant describes people with epilepsy as “epileptics” throughout his book, but never discusses in detail why some patients may feel uncomfortable with this label. A good example of this different view comes from Lily O’Connor, the protagonist of the 2014 film Electricity, which Grant briefly mentions as a recent creative attempt to represent epilepsy, for instance, through “swirling spectral lights” (p. 59). Yet, it is arguably in Ray Robinson’s 2006 experimental novel by the same title, on which the film is based, that we can find extensive discussion of discriminating labelling, as well as ground-breaking visual renditions of seizures on the page, thanks to the use of jumbled typeface or blank pages.

Unsurprisingly, it is Christopher himself, who provides the most compelling attempts to comprehend epilepsy in A Smell of Burning. When he calls his seizures “thingamajigs” (p. 160), he perfectly captures their uncertain nature, as well as maybe his own difficulty in absorbing obscure medical terminology. Similarly, in a very imaginative way, he introduces his GP to the Native American concept of Konyaanisqatsi (p. 165), life out of balance, to explain how his drugs made him feel in disharmony with nature. Christopher learned this concept from Godfrey Reggio’s experimental 1982 film on contemporary American landscapes and was planning to create his own filmic response to it, perhaps an analogous timelapse footage of the wanderings of an “epileptic mind” (p. 203). We are sadly never going to watch this promising film project, but thanks to A Smell of Burning we are encouraged to put into question our own perceptions of what constitutes balance and harmony, in our brains, our minds, and the world around us.

Poetry Book Review: Owen Lewis’s Best Man

30 Nov, 16 | by cquigley

best-man-frcov-copy

 

Best Man by Owen Lewis. Dos Madres press, 2015

 

Reviewed by Wendy French.

 

Best Man has just been awarded first prize in the Jean Pedrick Chapbook prize from the New England Poetry Club. When you read the poems you can certainly understand why Lewis’s work has received this recognition.

Edward Hirsch’s epigraph features at the beginning of the collection and is entirely apt for all that follows:

Look closely and you will see

Almost everyone carrying bags

Of cement on their shoulders.

 

How universally true this is. Although our bags of cement may be entirely different from the ones that Lewis carries, they are nevertheless present. It is for this very reason that Best Man can speak to each and all its readers.

The poems focus on anger, regret, failure and love. They are about all that it is to be human, and specifically to love a brother in a hopeless situation.

In the collection, each of the poems stands alone, but together they tell a story of dependency, support, and of the fight against a battle with drugs and addiction. The story needed to be told. I read the book as a single unit from beginning to end, as the poems together record a  young man’s life and were written from the standpoint of despair. Once I started reading, I felt compelled to finish. Lewis truly captures the pain and anger that he, an older brother, felt towards his sibling who was, as well as destroying his own life, destroying that of his parents, his grandmother, indeed his entire family. I was totally engrossed in the unfolding narrative and desperate to find out how it would all end. In each of the poems there is a level of intensity that drives the words forward and into the next poem.

The collection opens with Post-script, Unwritten Letter where Lewis looks back over childhood and the familiar games that children play:

‘… like the children we were

digging through the backyard soil, determined to get to China,

                                                                               The spot under the swings

 

where our feet whisked the ground before each pendulum soar…’

 

These lines determine the relationship between two boys. The poem ends:

‘Wherever you’ve been you’ll have something to tell me. I expected

                                                                                              to know more.’

I had to re-read these lines as that situation, where we have lost friends and want to know more of their lives, is so familiar. Tragically for Lewis, the loss is that of his brother, whose full story will never be known. How did this fall into addiction begin?

This was a brave book to write and it took Lewis thirty years to be able to tackle the content. Lewis is not afraid to be truthful:

I am still mad at you.

Every week another call

 

from a burnt-out Bronx

neighbourhood,  or Brooklyn…

 

…our grandmother told me you were ok.

She cooked you a pair of fried eggs. 

 

The very fact of a grandmother feeding her grandson, hoping that this might bring him back to his senses, reveals a family pulling together and trying to overcome the situation. When you care for a loved one, you believe that food conquers distress. We all at times clutch at straws.

Lewis comes from a Jewish background and it is not until the fifth poem, Once, that we learn that his brother Jason had been adopted. Born to an Italian mother, Jason is brought into the Lewis household by Lewis’s grandmother.

 

…Once upon a time, it’s true,

the mother and brother, a pair,

looking out, a long wait

for the new baby to get there…

 

I’m your brother, and, so I’m…

 

Too long upon this time.

 

The poems are dark yet also uplifting because of their honesty. Lewis never tries to excuse his brother or to make excuses for himself in how he responds to addiction. This collection gives readers permission to confront their own demons and to write about them. No one is going to judge us or our reactions. Lewis has shown us how to do it. He has not abandoned his brother but is still talking to him after thirty years. Jason still has a prominent place in Lewis’s life and he listens to what his brother may be saying to him from beyond the grave. Lewis is working through his own feelings and is trying to make sense of his inexplicable loss. He never once blames his brother as an adopted force that came into the family, but fully accepts that Jason is his brother, and that he died at the age of twenty three.

The poems are beautifully constructed and restrained. They explore the chaos that addiction can bring to a family. Jason’s girlfriend, also hooked on heroine, is behind some of the late night frantic phone calls that Jason makes to Lewis. I have the feeling that Lewis helped to sort out the chaos that still existed in his mind about his brother’s death by writing this elegy. It seems that Lewis’s second marriage to Susan was the catalyst for this collection. He wanted to introduce Susan to Jason, and vice versa. In the poem Introducing, Lewis writes:

 

Under the chuppah

The rabbi will call: Yaacov ben Simcha…

 

You’ll ride on my shoulder –

 

Best man!

 

These poems are compassionate:

 

And what of the family’s soul,

Mother, as if you already knew

his disquieted soul won’t find peace…

 

ruthless:

 

Your breath is foul from rotten

meat. Your nostrils flare me

fresh in the cave of your furry hug.

 

 

nostalgic:

 

Remember how each year

we’d come back, have to learn

the beach all over again?

 

confused:

 

… you don’t know how

you passed a bill to the cashier

or how she passed you change

and why she is smiling or how

your hand cold lift the cup…

 

angry:

 

Okay brother,

Give me what you got.

A kick to the solar plexus.

 

full of searching:

 

This morning, the hour of haze,

a blackbird called through my window

with some urgency. (I think it was you.)

 

This fine collection would be very helpful for any family involved with a loved one going down the addiction route. The poems are energetic and the energy released will speak to many who are trying to understand this destructive path. The poems could act as a personal counsellor by offering the different stages of grief. Each reader can digest the content at his or her own individual pace.

The book would also be a useful teaching tool in the narrative medicine field as it demonstrates how personal stories paint a lucid and detailed understanding of the subject.

But first and foremost it is a book of poems that Owen Lewis has dedicated to his younger brother who died at the age of twenty three while hooked on drugs. The poems reflect a tragic story of a young life wasted.

Best Man should be widely read as these fine poems hit hard upon the dormant tragedy in all of us that perhaps looms around the corner. Lewis’s work depicts an unsettled world that is within each of us. From the outset, we realise that we are not in for an easy read.

A finely produced book, Best Man has an arresting cover depicting youth, confusion, and the beauty of snowdrops that appear in a touching poem, Thaw.

I hope that for Owen Lewis the thaw has begun with the publication of this work.

 

Wendy French

wendyfrench.co.uk

 

Wendy French, Thinks Itself A Hawk, poems from UCH Macmillan Cancer Centre. Hippocrates press, 2016

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